Implementation of Low Vision Rehabilitation Advice for People with Intellectual Disabilities

People with intellectual disabilities are at a very high risk of visual impairment, often due to undiagnosed refractive errors and cataracts. Oftentimes, however, these people are being cared for in facilities that do not have knowledge about low vision, and do not know how to detect it. Low vision centers in the Netherlands take a pretty proactive role in screening for visual impairments in people with intellectual disabilities. However, it doesn’t help much if the advice these centers give, for example for glasses or lighting, is not followed up on by the intellectual disability facilities the people live in.

A recent study by Sjoukes et al. investigated factors influencing the implementation of low vision rehabilitation advice by facilities for people with intellectual disabilities. It was found that many staff at intellectual disability facilities are not sufficiently familiar with the advice given by low vison centers, because it is usually technical: “Beware that acoustic input is important,” just isn’t going to make sense to someone unfamiliar with vision loss, especially if they’re staff with generally only vocational training rather than care specialists. On the other hand, it sounds merely logical to say you should attempt to let the client hear rather than see things.

Implementation of advice given by low vision centers was reasonable to complete in only twenty out of sixty cases studied. Besides the fact that people may not be familiar with the advice, this is also due to the bureaucracy involved in implementing adaptations. If a client, for example, needs specific lighting accommodations, the staff are going to need permission from the management to change the home lighting. I can tell you that in the Dutch system, changing anything about the setting is going to create a lot of hassles.

Besides this, it usually takes at least four months between the initial screening for visual impairment and the advice report. This seems like forever to me, but then again indeed when I was at rehab, there were four months between my admission interview and the day I got my advice report, too.

The authors make the following recommendations to low vision centers to increase the implementation of advice they give:

• Only screen [for visual impairment] when the board of the service provider agrees to support the implementation of advice;
• Reduce the time between screening and advice;
• Write the advice concisely and in an easy to read style;
• Start the advice with a summary of the most important points;
• Offer follow-up by telephone 3-6 months after the advice;
• Make sure that carers are (and stay) familiar with the advice by mentioning it in the updated care plan;
• Make agreements that in case of (re-)building facilities for people with ID the low vision centre will advise on illumination and design to adjust buildings to the needs of people with ID and low vision.

Now let’s hope the intellectual disability facilities will cooperate, too.

Reference

Sjoukes L, Kooijman A, Koot H, Evenhuis H (2010), Rehabilitation of Low Vision in Adults with Intellectual Disabilities: The Influence of Staff. Journal of Applied Research in Intellectual Disabilities, 23(2):186-191. DOI: 10.1111/j.1468-3148.2009.00516.x.

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Sense and Nonsense of Treatment and Educational Plans

Recently, there’s a lot of discussion about Individualized Educational Plans (IEPs) on one of the mailing lists I belong to. This discussion used to make me jealous, because, in the Netherlands, educational programming for students with disabilities may formally be based on a plan, but the plan is rarely followed and often, the student or parent isn’t even being informed. At least, when I was in high school and attending meetings with my visiting teacher of the visually impaired, these meetings were so informal that there really was no way of knowing whether what had been agreed upon, would be followed through on. Actually, in 2005, I received a copy of a document my visiting teacher had sent to the rehab center, and was surprised to find the strangest goals in it, that had neither been addressed nor worked on. I used to think that the reason was that most were social skills goals, and my teachers had long given up on that, but now I know better. Plans – whether they are school-related intervention plans, rehabilitation plans or treatment plans in mental health – are meant to be useless formalities that only serve to provide written documentation of what the professionals are already doing anyway. If any change of goals or strategies is suggested during a formal meeting, be guaranteed that it will not be followed – at least not if you happen to agree with the change. The nurses in the psychiatric hospital try to use the fact that I’ve been here for a year as an excuse, claiming that after this long, everything should be clear or will never become clear. Well, I tell you, it’s been this way ever since I came here last year: almost anytime anyone suggested that the current intervention might not be working or might not be the most desirable, this was put nicely into the treatment plan but forgotten the minute after the meeting had been closed. This happened to the suggestion that, rather than just putting me into time-out or threatening time-out in order to shut me up, we try to figure out why I had meltdowns. This suggestion was done on the January 24 treatment plan, so nowhere near the time when any change would mean nothing would ever become clear anymore. Not only was the time-out threat system continued without any change in intervention, and only terminated because I’d shut up for enough time, but it was the first thing my doctor came up with the day after I had a bad enough meltdown again. The only way to shove the ineffectiveness of the time-out stupidity into the people’s face, was by pointing out it was a major reason for the resocialization ward to turn me down. Now any meltdown is supposedly “normal” or “to be expected given circumstances”, regardless of the fact that I exhibit the exact same behavior, in roughly the same context, that earned me the time-out policy last June.

It’s not the hospital’s fault. Blindness rehab never gave me a plan, either, and skipped the ninth-week evaluation. They introduced formal rehabilitation plans only a few weeks after I’d started, so I never benefited from them, but I guess now that it wouldn’t have made a difference anyway. The training home put together three goal-achievement plans in eighteen months, while you should be getting one every three months, and only revised my care plan when a new request for funding was due.

<PIt isn’t saying that no changes in intervention occur. In fact, they always happen inbetween planned meetings, so that you have no time to go over the implications and discuss them reasonably. Both of my time-out policies were introduced inbetween treatment plan discussions – the second only a week after my treatment plan meeting -, and so was the vast majority of my follow-up placement decisions. No wonder that it was such an unclear mess: the open admission ward vs. resocializatioon ward battle was finally resolved when we did discuss it at a formal treatment plan meeting. But don’t ever think that you, as the client or patient, can change the way you’re being dealt with inbetween treatment plans. When I withdrew my consent for the time-out policy in the middle of August, anticipating being refused by reso ward if the policy continued, I was told to wait till my treatment plan and was then threatened with forced discharge. Treatment or care plans are important if the staff need them to be – ie. if you want to make changes that they disagree with -, but are just formalities if it suits them better – ie. if they don’t want to answer your critical questions. Monday’s my next one, and one nurse has already sort of vowed to be personally responsible for making it a totally useless formality.

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Thoughts on Being Confronted with My Current Situation

When at the rehab centre for computer training (MS Outlook) today, I ran into Petra, a woman who was at the centre for leisure and volunteer work rehab when I was doing my basic rehab, and who is now finishing her programme cause she was home with a broken leg all of 2006. She asked me how I was doing in Nijmegen. I have no problem saying that I’m not in Nijmegen and explaining what I do now, but it did feel confrontative to meet a woman whom I’d last met during my time of being most radically determined – oh well, pretending I was.

I remember the images I had of my future back then. They were the same images I’ve always had when I envisioned going to college: the one image was a completely normal, successful college student, involved in politics and living completely on her own, and the other may’ve started college, but could never keep up and ended up completely getting stuck within three months. She would’ve been in the mental health system (though I didn’t think out how she’d get her referral, but well) within half a year. Now I see the second one coming true and that hurts. In one sense, I’m of course still in college and you’re not crazy cause you’re in the mental health system but the other way round (and well, what’s “crazy” anyway?). IN another way, however, it makes me feel like giving up cause, apparently, the black image is coming true. This is not so much cause I’m in the mental health system, but for how I see I act. You see, oftentimes I was able to excuse or rationalize my behaviour cause it occurred only in one context. Like, in high school, my tutor was the most bothered by my getting “locked up inside” and, even though he used to use it as one of his reasons why he thought I needed help in early 2004, I never quite saw the logic in that. And my parents were the ones to whom my behaviour trouble was mostly directed, and they don’t even see it as significant now. Also, it wasn’t till as late as December, 2005 that I realized that my behaviour wasn’t normal even in certain contexts. Now I see how, though I still mostly misbehave at training home (probably cause that’s where I am most of the time), I get “locked up inside” in a variety of situations and it’s causing me to function poorly, too. The only thing that makes it worse than the image I had in my mind, is that I am not even in college (well, not full-time) and I’m not living on my own and I still experience it. But I have still hope that I can improve somewhat.

The thing is, I cannot have that other image for an alternative anymore. Well, I can dream of it and work towards gaining skills so I might more closely resemble her, and I might even become somewhat like her if I manage to keep my figurative voice, but I cannot deny my actual problems anymore. And that’s essentially what that other image is: like Mary from Cal Montgomery’s article, she has all her impairments denied. She might be discriminated against, but she isn’t handicapped. And I seem to be. And it isn’t about blindness anymore. Hell, I wish it were.

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Thoughts on a Seminar

Went to a seminar on social and emotional experiences of blind and visually impaired adolescents and young adults today. I was a participant in the research project in 2004 so was invited to the seminar. The results, as I’d already expected, were pretty positive: in most areas, blind and visually impaired adolescents and young adults do as well as sighted people. The only things that were abnormal were that blind people’s social network is usually smaller than that of sighted folks but not qualitatively impaired, that blind folks have more friends who are older than them and that they want more contact with non-disabled age peers, and that their general idea about their social competence is more negative than that of sighted people. Generally, we’re supposed to be as well-adjusted, happy etc. as sighted people our age. Well, I was worse than average in everything, but I already knew that.

After the results were presented, one participant shared his life experience. The only thing I remember is that he wanted to be a journalist but both colleges (Utrecht and Zwolle) refused to accommodate him, so I guess I’ll hope that the thirteen year age difference between us (he’s 33) makes all the difference if I decide to study that. Oh yeah, and he did make lots of statements about how you had to have everything clear about what you wanted etc. etc., and I was like: sure, if it isn’t going to mean I’m going to let myself be held back.

Leonie, a girl who used to be a training home client, did a talk about rehab and about her life in general. Overall, she was pretty negative about how training home had supposedly tried to hold her back by saying she should be in sheltered housing for people with intellectual impairments or acquired brain damage (she has a brain injury). Is the fact that I don’t seem to be noticing this now, a sake of my having given up normalcy after I noticed that I wasn’t holding on? I do think, in part, yes, because I used to be far more negative about training home than I am now. This is, however, a mutual process: I dropped the belief that I want to be doing completely without any form of assistance in living or school (I could do it like I did in high school, but refuse to go back to that time cause of what it took from me) and the staff have realized that I can really learn, in both the practical and the intellectual sense. I remember Renee sending me a newsletter from Sonneheerdt in maybe April. Now I must explain that Sonneheerdt is a vocational college for the blind which is really not suited for me cause its education is far too practical and not intellectually challenging. Obviously, I should be far away from that. Renee knows now and is more focused, at this moment, on my going to college than I am myself. This might change, of course – Leonie said that they wanted her to become a receptionist indeed, while now she’s in college doing Cultural Social Work -, and that’s exactly why I have to educate myself about the realities of “realism”: my situation is not determined by labels or irrelevant details, but by experience, but it’s labels and (irrelevant) details that can give an indication for what may or may not work, hence making it possible to refrain from having to re-invent the wheel time and time again. In other words, while it’s my personal experience and determination and opinions that determine whether I actually need this or that help or whether I can do this or that thing, knowing certain things about myself (not necessarily medical stuff, but medical labels are the most noticeable) allows me to indicate how this help, should I need it, should be organized or how I might or might not do something. To give an analogy, suppose I were depressed, cause it’s easy to explain. The shrink who diagnosed me might recommend cognitive-behavioural therapy and anti-depressant meds, but it would always be up to me to decide whether I thought I was depressed enough to think I needed therapy or meds. Even in cases of serious mental illness where the patient is a threat to himself or others, the shrink can only have him committed involuntarily and cannot force treatment upon him – and it should remain this way. There are people, of course, who believe that people with a particular diagnosis cannot decide what’s best for them. Usually these are mental illnesses, like in the article I linked to yesterday, but I assume that in the 1950s and 1960s the same assumptions were made about the blind and besides, they’re mostly incorrect about mental health patients, too. That attitude is false and I’m known for disobeying it and it should remain this way even in the vulnerable state of “realism” I’m in now. Both Leonie and the other guy highlighted this and while both of them seem to have a clearer and more consistent image of their situation than I do, it doesn’t take 100% clarity to stand for what you do have clear. Practically, if I don’t know what I am going to major in next year and how I’m going to accomplish this and whether I can do it at all, it’s up to me to get an image of why I don’t know what I want to major in and why I don’t know how to accomplish it and why I don’t know whether I can do it at all and go up to whoever can help me clarify further, like the student counsellor or whomever. Or if I believe I have a problem and hence get a mental health appointment, even if it weren’t my initiative, then it’s up to me to clarify my reasons for going for that freaking questionnaire and the family doctor and the January 16 appointment and, if I need to, get Renee to go with me on Jan. 16 or whatever. This is exactly what Renee and Arda and everyone have been telling me for months, after I quit my determination to an at that moment unrealistic goal and swung all the way to the other end of utter confusion and unclarity. Clarifying that your situation is unclear, doesn’t need to be a paradox, let alone an antithesis, if you know what makes your situation utterly unclear. The problem is still that I have my communicative difficulties (in the sense of “locked up inside” stuff, etc.), that I, by the way, also had when my situation seemed 100% clear, which makes it difficult to get across what I do know.

Some folks from Bartiméus did a presentation and, while they were doing theirs, I wondered why I hadn’t heard of any of their services when training home should’ve known this. Leonie said that since Philadelphia is catering to mentally retarded people, they may not know these things, but I know it’s going on around everywhere. Even our job field orientation cases are full of lack of cooperation – in the most recent, about a dysfunctional family, I was supposed to work out agencies the social worker could direct the family to, and I pretty much took all agencies that are already involved in the family’s support and demanded they cooperate. Besides, in the blindness field, there’s a lot of rivalry between the various agencies that’s only going to become worse with more commercialism in healthcare.

After the seminar, I talked some with the woman who interviewed me for the project. I also met the mother of a former classmate in elementary school. She asked all about what I was doing and how I’d gotten there, but I still don’t know how this boy, Arjen, came out. I’d really like to know, but there was no time for me to ask.

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One Year in the Disability Service System Today

Today, I’ve been abusing the disability service system for exactly one year – or so it feels. In other words, it’s exactly one year ago that I started at rehab. This whole year seems to have had an “am I getting better or am I getting worse” connotation, and everyone probably has different opinions on that.

I already had this feeling in my first or second week at rehab, when I was trying to come to grips with the idea that I supposedly was “further” than all the other students cause I was congenitally blind, yet at the same time, I had Menno (the former student at my high school) tell me about table manners when my mother expected me to help him with Braille learning – which I’d have eagerly done if he’d asked me.

I remember the model of adjustment to disability I learnt about in September. It helped me in two ways: firstly, it was written with congenitally disabled people in mind, and secondly, it made clear that putting non-disabled values into perspective did not necessarily mean abandoning them. In other words, just because I had to ask where bus three would stop at the dynamic bus station, didn’t mean I couldn’t use public transportation. It may sound silly, but, as you know, it became one of my major accomplishments at rehab.

The other, of course, was equally controversial: the “realism” about my visual impairment. This didn’t become fully-rounded till sometime in February when I’d started to acknowledge the practical implications of my blindness – something you can’t truly learn in CPH training with theoretical cases. I’ve meanwhile returned to my old approach to my blindness (the one from before my vision loss of 2004), but I don’t pretend there are no further adjustments to be made when my vision changes again or something like that.

Realism got a much broader meaning by March, 2006, when it became the main point in my fourteen-item list detailing my current situation: I didn’t know what was realistic and I didn’t know whether I’d know by September. I wonder if, within ten days, some magic will be done. If not, I still don’t know. In fact, I’m worse now than where I thought I’d be by now last March.

I’ve always wondered, since realism became something more than to be able to transfer buses at Apeldoorn station or to know the medical details of my visual impairment: what is realistic for me, and is this truly “putting non-disabled values into perspective”, or am I abandoning them, or is it not about disability at all? I didn’t like people’s remarks, mostly in my early weeks here in training, about how I supposedly don’t accept blindness. I accept the technical details of my visual impairment as they are – ie. the fact that I have light perception only and am, hence, functionally blind. The contexts, however, in which people have used my accepting or not accepting blindness or any other characteristic of mine (but it’s easiest to say blindness cause that’s what most people agree to has to be “accepted” or “adjusted to”), is always related to some paradigm they hold about what that characteristic implies, and my unwillingness to conform to that paradigm. Well, I am extremely reluctant to conform to *any* specific paradigm about what any or all of my characteristics do or do not imply, and sure, I have a negative self-concept, but I don’t think there’s a reason why I should conform to what the people here, or my parents, or my sister, or whoever say in order to change it, and if so, to which.

I think there are people out there who assume my rather negative state at this moment is due to my having been involved with the disability service system too much. My first inclination is to disagree: I firstly, was not in a positive situation in 2005, either, and secondly, why would it specifically be the situation here that is wrong, and not any other? I remember those remarks made by my parents about my having been “indoctrinated” into making decisions they disagree with, and I’m honest: very few decisions I made, are 100% mine, but wouldn’t they be my parents’, if I made the decisions they want me to make? I’m confused about this again, and I can’t keep from connecting all of this: I’ve been in the disability service system for a year, if I don’t majorly screw up or CIZ (agency that determines who gets services) is going to nag, it might become two years, I’ve practically learnt a lot but not enough according to everyone’s standards, but people would most likely only see the fact that I’ve altered my plans and am not yet in Nijmegen. Maybe I’m indeed just wasting state money by hanging around here. I don’t know.

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Last Week of Rehab

I’m almost completely done with rehab – in fact, the only things I still have to do are some occupational therapy on Wednesday and the CPH training on January 6. That means that I did a lot of evaluating over the last week, not only cause most rehab folks asked me what I’d learnt from their instruction and cause I got a survey on Tuesday, but also cause I’ve done some looking back.

I started on Monday with the last discussion with Kira. In advance, I’d written down the explanation of my visual impairment – that I’m blind but still have a little bit of sight that I sometimes use but that also bothers me due to light sensitivity -, and I just read it to her, cause last week when I just had to explain plainly, I got completely “locked up inside”. This time, it went reasonably well – I was still noticeably nervous, but at least got somewhere. I said that if I’d written that my name was Peter and I lived in Amsterdam, I’d have read it just as easily. And that’s exactly what function this just reading what you’ve written stuff has. I’ve known that, but it feels somewhat embarrassing, cause I usually need far fewer written reminders than most people going for discussions or the like (I never bring any with me) but I use it when I can’t say something. It’s kind of strange.

I also had some questions about where to get an uplighter – in regular lamp shop (only there’s no in Apeldoorn) – and where to get the sunglasses I want. We ordered them at a shop I’d never heard of. They’ll probably arrive next week, but I was allowed to borrow the sunglasses I’ve worn at rehab till January 6.

I also had four hours of textural arts and did some sewing and made a Christmas decoration. One of my works is unfinished, but I was allowed to take it home. I also took the bin I’ve been making in crafts class home. It isn’t really finished, but sort of.

Mobility meant the same route as last week, which is a route full of objects which I have to avoid. We also evaluated mobility and I think it has been going quite well. It’s still something I’ll have to pay attention to, but I can – and besides, using your cane properly as to avoid bumping into objects is something you’ll have to do all the time.

The same applies to physical therapy: I really have to pay attention to my posture in order to correct it – my natural posture is still very bad -, but I can do that, and Thony by the way also mentioned it when we went for the admission interview at “De Boomgaard”.

Occupational therapy is almost finished: we discussed and tried out the MPO (a kind of organiser with braille) on Wednesday and ironed on Thursday. Next week, we’re still going to cook and eat a meal together, so that Ellen can still give me some tips on using cutlery correctly.

My discussion with Hennie on Tuesday was a kind of evaluation as well. As I assumes she’d sort of noticed, our discussions have gone well at times and bad at other times, and I realize this is something on my side. However, mostly I’ve found them pretty useful. We by the way also got to discuss socialization somewhat, but this is still a pretty complex issue, as you might guess.

Cause everything eventually ended up going quite well, my discussion with my counsellor on Tuesday also went quite relaxed. We did have quite a bit of paperwork to fill out cause of my re-indication for “De Boomgaard”, but the talk was not troubled or anything.

That is not to say that I did not feel it necessary to mention the poor evaluation as a comment at the survey given to me on Tuesday. It was my only criticism – there are some policies I disagree with, but that’s politics and not my personal situation. I forgot to mention that the way I was treated surprised me positively – but maybe after eighteen weeks I’m used to it, cause even my parents seem to have lost their prejudice – unfortunately to the point of having lost their critical stand towards agencies, which I haven’t.

My week ended kind of interestingly with the Christmas dinner, which was very cool and nice. The theme of the meal was something about Dutch provinces and that meant that they’d put provincial names before the names of each of the foods, even if the foods didn’t come from that province anyway. It was still very enjoyable.

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Thoughts about My CPH Case

On Monday, I had a very difficult discussion with Kira. Well actually it didn’t really get anywhere. I tried my CPH presentation on her, which failed totally cause I got stuck almost immediately. I was so confuxsed or something like that, which is strange since I think I should know what is at least important and then I only run a risk of leaving out important info. Still, I got stuck and I couldn’t get anywhere. Kira was somewhat concerned cause I seemed so uncertain. I am and I don’t want to be. Maybe I should be more concerned with the form of my statements and less with their content, but I’m still confused about that. I’ll discuss this situation later.

On Tuesday morning, Hennie asked me about CPH and I said we’d discussed cases but not mine yet, which we were going to on Friday. Somehow, we got to speak about my case and what to explain and not to explain. For some reason, at that moment, she asked me the question whether I see myself as partially sighted or as blind, even though I have light perception. I’ve not gotten this question in any other tone than neutral – which this question clearly wasn’t meant to be – for nearly eight years – since the 1998 educational evaluation -, but for some reason, it didn’t surprise me that in the course of CPH I would sometime get the question. It’s meant to signal a connection between one’s explanation and how one feels about one’s vision impairment, and I’ve questioned the existence of this connection many times over the course of these seven weeks. It was what I explained in one of the first CPH meetings: that my parents always connected any mention of or reference to residual vision to poor adjustment to blindness. Ellen has commented on this statement of mine many times, and each time it prompted me to evaluate the facts around the topic: I couldn’t say honestly that I was totally fine with my blindness, but I could say that the reality of my vision or the lack thereof was something I accepted fully as it was – and, indeed, not as what it might become: total blindness. I mean, sometimes I hate my residual vision and wish I could turn it off, and sometiems I’m happy I have it. Either way, it is exactly the way it is. I answered Hennie’s question by saying that I saw myself as blind, cause I do. Then she got into some questions about how I felt about my blindness which I didn’t fully understand. She somehow connected it to a statement I once made about my father telling me not to “handicap” when I falsely connected a problem to my blindness. She asked if blindness at that moment didn’t have a negative connotation? Of course it did, in that I irrationally attributed difficulties to it, but I must honestly say that I’ve improved pretty much in not “handicapping” over the past while. Meanwhile, by the way, I’d lost the thread of discussion.

For some reason, Hennie got into an explanation of my being functionally blind, apparently to rationalize why it made no sense to explain anything beyond “I’m blind” to a professor. A pretty strange question in this context was whether I use my vision for mobility. Yes I do, but I mostly use alternative techniques and besides, I wouldn’t consider that to be relevant to a professor anyway, and as far as fellow students are concerned – they could just ask. I agreed to all she said and tried my explanation on her several times, each time leaving out more and more details, but eventually each time getting stuck. “Aren’t you done with that?” she asked after one of my explanations ending in my getting “locked up inside”. She meant to say that it was most likely enough info. I can’t remember if I thought so or not, or why I got stuck in that particular situation. I couldn’t explain why I got stuck anyway. We’ve been discussing the “locked up iside” feeling before and she asked me if this was a form of it. It obviously was. In this case, by the way, I wasn’t finished with my explanation yet, and I knew exactly what I would also have to explain, but I could do nothing with it. It’s almost a standard course of the “locked up inside” thing: I know perfectly well what to say or do, but for some reason I feel kept from going on. I know, rationally, that I can and should do whatever it is, but often I sort of feel like I ain’t allowed to. Hmm, I’ve always believed, and still believe, strongly in the power of “mental alarm clocks”, as Monika calls them. Hennie theorized that if I thought I couldn’t explain my situation, I truly couldn’t. I guess this idea does contribute.

On Tuesday afternoon, I decided that Hennie was right that there was absolutely no relevance in mentioning my vision – if people were interested, they’d ask me anyway. Explaining vision is something much more controversial than appreciating it, and using it is in between: no-one can ever tell me not to appreicate the vision I have, people can point out the effect using vision too much has on me – like Martin on Wednesday correctly informing me that I was concentrating less on my cane cause I was concentrating on my vision -, and of course people can tell me that it doesn’t have any relevance to explain vision to professors or fellow students, for that matter. I don’t contend, by the way, that this has anything to do with adjustment, cause the average professor or college student doesn’t give a damn whether I’m adjusted or not, and no-one except for me can conclude accurately how well-adjusted I am.

On Friday, I eventually had my case discussed. I can’t remember how exactly it all went, cause we discussed and roleplayed in many different situations. Sometime early in the discussion, we got to speak about what I was going to explain and I mentioned my intention not to explain vision, since the more irrelevant details you provide, the more likely the chance that people will forget truly important information, like that they need to provide their information in a digital format. No-one seemed to agree. I once again mentioned the fact that if you say you’re blind, they’ll likely attribute anything they see to your blindness. No matter how incorrect this is, it’s not in itself a reason to explain about vision. I said that with fellow students the situation might be different cause you don’t have only academic contact with them, but a professor wouldn’t give me a minute less of class if they didn’t understand something about my situaation.

I could, of course, use some politically correct term like “nearly blind” to identify myself as, as to avoid confusion should my light perception be an issue but as to not overemphasize vision. However, I didn’t really understand why people, no matter their relationship to me, would actually wonder about my situation given the information that I’m (totally) blind. I mean, to take the classic example of looking for sidestreets: that could just as well be some blindism. Monika, who attended the training, contended that most people didn’t know about blindisms anyway. That doesn’t matter: it matters that they’ll think that of course it’s the way it is cause after all she’s blind. Ellen explained how my behaviour is clearly different from that of a totally blind rehab folk she knows: not as in a negative or positive way, just different. Monika also gave the example of my looking at an agenda. Well yeah, still I guess hardly anyone at high school would have known or even wondered about my residual vision had I not at one point mentioned it. In the eleventh grade, Mrs. Van O. asked me about it, while she’d taught me in seventh and eleventh grade.

Of course, there’s the one difference of my currently being very light sensitive and wearing orange sunglasses – well, if I can get them, which I still can’t -, which according to Ellen are far too light to be seen as glasses to hide a blind person’s unattractive eyes. I never wore sunglasses in high school – during twelfth grade, when I finally had them, I felt embarrassed about wearing them in school cause at that moment they couldn’t be seen as camouflage glasses anymore cause I’d not worn them before – so I don’t know if people would wonder about them.

We roleplayed many situations. One was a situation I had encountered in crafts class where I reacted rather curtly to another student (who is in my CPH group) offering me assistance. I can’t remember how we got to speak about this situation, but at first I was asked to play “me”, ie. to act how I’d act. Then, Monika acted “me” and then I was asked to act like Monika would. Monika is a very spontaneous woman, so that’s how I acted. It didn’t surprise me that the result was quite different, cause I’ve always known that I’m a quite good roleplayer and have in fact, hopefully unnoticeably, often used my abilities in getting out of “locked up inside” situations.

We also got to do the explanation to professors. It went, at first, totally wrong and I got stuck. I later tried to play the spontaneous person once again. We drew the conclusion that it would be a good idea for me to write some “introduction” in advance for the professors to read, which I could then later explain further about. It would also somewhat settle the issue of what is and isn’t relevant, cause I could ask the folks if they had any questions. By the way, eventually the explanation to professors went pretty well, and so did the explanation to fellow students I tried, cause I only gave a brief introduction but made clear that questions were welcome.

In the end, Ellen asked me to make a list of all the adaptations I’d need in college, as to build my introduction upon. She divided them into technical adaptations, like a braille display and computer, human assistance, and other things that would make class more comfortable for me. I made a start with the list, but it’s by far not finished yet. I think I’ll ask my father if I can have the introduction he wrote for the high school.

Next week, Ellen can’t give the training, so we were seeking another moment. On December 23, I could come wihtout difficulty, but the student who will have her case discussed than couldn’t attend. December 30 would be fine if it were discussed with my counsellor, who told me that if I wasn’t completely finished by December 23, I could do some activities in the next week. However, then another student couldn’t attend, and we are only three or four people in the training. Ellen proposed January 6. I said I thought it wouldn’t be a problem but asked her to discuss it with my counsellor. Another option would be some other time next week, but Ellen has a very busy week then, so it’s going to be January 6.

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Rants on a Frustrating Fifteenth Week at Rehab

This week was pretty frustrating at rehab. Monday and Friday were good, and so was most of Tuesday, but Tuesday evening and Wednesday and Thursday were bad. I had something called an “experience trip” on Wednesday and Thursday, but none of the activities were particularly new or challenging. All we did was having to travel to a particular bakery in a nearby village by public transit. When we found it, we had coffee and a spiced biscuit. Then we had to find a particular farm, where all we did was cuddling cows and having lunch. The walking trip that followed wasn’t particularly difficult and that was the end of the day, except for chatting which we do each evening. On Thursday, we did horseback riding, eating pancakes and abseiling or tandem biking, all of which I’d done before. I wasn’t the only one who found this: all of us did. The only “challenge” was that all of it had to be a surprise and for the folks who hadn’t attended the summer programme last year, most of it probably was. Of course, some blind people, especially those with additional conditions, find it challenging to even walk such a distance, and for some I think that travelling by public transit was a challenge, cause not everyone is as far through the programme as I am or has the same experience using public transportation I do. I mean, of course, as a congenitally blind person, I might have an advantage, though I got some questions that implied that I had very limited experience, like if I’d ever been to a farm – of course I have. Others got those same stupid questions though, so it’s not that they assume that as a blind person you won’t go to farms, while as a sighted person you will.

While having lunch on Wednesday, I resolved not to think about what I could’ve done at the centre had it been a normal week. I couldn’t. It’s my fifteenth week and I felt as if I were wasting my time cuddling cows and eating spiced biscuit. Maartje, one of the mobility instructors who went with us, said that I’d had my mobility instruction for this week by getting to the bakery, the farm and the sleeping place. Well, it was nothing more than following the other students, and finding out that one person had used a portable tape recorder to record the route, which is a useful technique I hadn’t thought about before. In short, I feel that the surprise effect does not at all outweigh all the far too easy activities. Team three folks (partially sighted people) do far more challenging activities, and it just can’t be the greater amount of vision, cause I did many at the summer programme. We found it better to prepare for it in advance, like having to shop for dinner, etc. Oh, Maartje also commented that I’d already had my Occuptional Therapy cause of going to make fried eggs on Thursday morning. Well, that used to be my only cooking skill before I got OT classes, and its only novelty was frying them in the microwave. Now the folks are thinking of preparing for the trip in the OT workshops – I hope they’ll follow through with the plan.

I was pretty grouchy throughout Tuesday evening, Wednesday and Thursday. It all had to do with a very bad discussion with my counsellor on Tuesday afternoon. I didn’t get to speak to the rehab workers on Monday cause they give classes then and of course all my classes were cancelled cause of that stupid trip. I do realize that I have a responsibility in discussing my concerns and goals with the folks and I eagerly admitted that to my counsellor, but it’s frustrating when all of your classes are being cancelled so you have difficulty speaking to the folks. Besides, I find it utterly annoying that I just don’t get any reaction beyond: “Then you’ll do it next week,” followed by the question if I had news about “De Boomgaard”. “Is he nagging about ‘De Boomgaard’ again, huh?” the folk commented. Well, I felt like: apparently he realizes that he’s nagging about it each week, so why on Earth not quit it for a change, especially cause he asked me if I had any news and I said I didn’t. Of course I didn’t have news, cause I’d said last week that I’d talk to Ellen, and I couldn’t cause she was on holiday and my classes were cancelled this week – besides, Ellen hardly ever attends them and they are on Wednesday and Thursday. The counsellor would tell her about my wanting to talk with her about “De Boomgaard”, so I hope she’ll finally attend my OT next week. Still, I felt like: what does this all mean? It was six weeks ago that I first expressed my concern about OT and mobility. The reaction then was that everyone has limitations to what they can and can’t do and a conclusion that it was going well, and I wanted to agree cause apparently the folk had not heard negative comments about me. Two weeks later, he asked me if I had enough mobility instruction, and I said I didn’t know cause I had nearly as many classes as I’d already had. Maybe at that time I should’ve been clearer about what I was concerned about, but I felt I did learn some things and couldn’t guess at the time what could still be learnt in seven more lessons – after having had eight. Three more weeks later, so last week, I was really seriously concerned and expressed it, and was told to discuss my concern with the workers. So I wanted to but didn’t. Then this week I was told that then it would be next week. It’s my fifteenth week! I have only three more weeks and feel sincerely that I’m going to be kicked out of the centre by December 22. That’s also what I expressed, in somewhat more subtle terms, when the folk commented about “De Boomgaard” as if it were no problem at all that I hadn’t yet had a chance of discussing my concenrs with Ellen so to make a decision: I don’t want to leave on December 22 without any plans for what to do next except for studying. The folk likely understood.

In the evening, another student told me that after nine weeks or so, the rehab workers should’ve evaluated my case and this should’ve been discussed with me. Either the evaluation wasn’t done or it wasn’t discussed with me, and this made me really pissed off, especially since I rarely get any feedback, from either my counsellor or the workers, beyond “We’re almost done” or the like. I feel that the mobility instructor agrees with me about what I still have to do – I’m just scared I don’t have enough time -, but the OT trainee apparently doesn’t. Oh well, maybe he does but my expressing my concerns a couple of weeks ago was just not clear enough. Clarity is not among my strengths when addressing this stuff, and I realize therefore that it’s as much my responsibility to make sure we evaluate the process appropriately as it is anyone else’s, if not more mine. The other students I spoke with on Tuesday didn’t agree, but I do think it’s reasonable for my counsellor and the other workers to expect it from me. After all, it’s my rehabilitation, not anyone else’s.

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Ramblings about My Concerns about Rehab

The occupational therapist was on holiday last week – argh! That meant that two of my four hours of OT were cancelled – the trainee mostly teaches me and he did on Wednesday as well, but on Thursday he was ill. It also meant I couldn’t ask her about “De Boomgaard” on Monday and still haven’t made a decision. I sometimes think I should go there cause the place is a better place to work on what I’m still lacking than my parents’ home – not so much cause I can’t practise cause I can when they’re at work, but cause they won’t let me make my own decisions and will constantly make vague judgments -, but on the other hand I fear that the home is only going to be negative and stereotypical. My counsellor, to whom I talked about it on Tuesday, said it might be an idea to ask some girls who’ve been living at “De Boomgaard”, but I don’t know these girls.

As I expressed my concerns about occupational therapy and mobility, my cunsellor wanted me to discuss my goals for the coming four weeks with the folks. Well, I still don’t have the stuff clearly and that’s partly cause I am horrible at expressing concerns appropriately and partly cause I sense that mainly the OT folks think that I’m going to “De Boomgaard” anyway and I feel uncomfortable when the OT’s trainee pages through a book called “daily living skills” and says there are only a few things we’ll still have to do. It makes me feel as if I shouldn’t nag. I want to see if I can speak to the folks on Monday, cause during class I just can’t get my concern across and besides, all my OT and mobility classes will be cancelled this week cause of some stupid trip I don’t feel like going on anyway. At least I think I have clear what I want people to know, but so I did last week and I had difficulty expressing it, but maybe this time it’ll go better.

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Thoughts on Monday’s Sight Training, Residual Vision, and Adjustment to Blindness

I started the week with sight training with Kira on Monday. We were going to try out tinted glasses. She had a whole lot of them, but after my first selection I still had seven pairs. After another round of selecting, I had five, then two. After the hour’s try-out I managed to end up with one pair, yahoo! Its only drawback was that the pair I was trying out was too large for me, but Kira would see if she could get it in a smaller size for me to try out for some time. Many pairs I found too dark, and I commented on it. Why now? It’s winter, so I don’t have the changes of lighting stuff. Does it matter that I just can’t see through the darker glasses? I broke the cardinal rule of sight training in my first two weeks of rehab, but I knew I could do so to Kira. I now feel that being honest that I don’t function entirely non-visually is better than to pretend that I do and to end up confused about the meaning of my residual vision or the lack thereof. After selecting my favourite pair of sunglasses and
deciding to return to Kira on Tuesday so she could see if she had the smaller pair, I wanted her to ask if she was willing to listen as I tried my explanation of my blindness on her. I was at first shy, but asked her anyway and she was willing to be my listener. The first time, I got stuck at my
first sentence. Man, was it ever frustrating. I had had no difficulty explaining my situation to Kira four weeks ago: all I lacked then was some understanding of the medical terminology as it related to my situation, but I had gotten those answers partly four weeks ago and partly last week, and
besides, I could leave out technicalities cause that’s exactly what a CPH explanation is meant for, and Kira knows: it’s meant for explaining your disability to a layperson. And still I got stuck. I tried to relax, then tried again and got stuck once again. I was completely confused. It’s not
just about what to explain and not to explain, but I’m just still confused about what position I should hold for myself. As I explained my feelings of confusion to Kira, she understood that it wasn’t that I couldn’t explain my situation, but that I didn’t know what to explain and not to explain.
I made clear that I was still confused about how to look at my own situation – explaining is even a step further. I have still not fully identified what consequences my vision or the lack thereof is having. Kira thought it would be a good idea to explore some of that in sight training, by for
example going outside so I can explain what I see and she can say what she sees. She agreed with me that I need to use mostly non-visual techniques – we got to speak of that cause I mentioned my concern about the situation before 1999, not accepting braille or the white cane, which I do now -,
but she contends that using non-visual techniques does not mean not using your vision. And who knows, maybe we do indeed conclude that I can’t really use my vision, huh? Kira wanted me to think about whether I think I’m allowed to still have some vision. This is a confusing issue, as vision for
me has both advantages and disadvantages. There are situations when I wish I had black glasses. But does that mean that vision is *always* disadvantageous and hence I shouldn’t use it at all? Today in CPH, I made a list of the advantages and disadvantages of my residual vision. I found four
advantages and two disadvantages. But it’s not statistics: I realize, and so does Kira I’m sure, that taking care of the disadvantages has priority over realizing the advantages. Isn’t that what Mirjam said as well: we weren’t going to seek out lighting that’d enhance my vision, just lighting
that’d help me minimize photophobia problems. We did for outdoors and we’re also doing it for indoors now, but does the fact that I sometimes prefer blindness over vision mean that I should do so in all situations?

As I waited for physical therapy on Thursday – my counsellor had put the wrong time on my schedule, so I was 45 minutes early -, I was thinking about my situation over the last six years and how it’s related to the progression of my eye condition. I’ve known for about eight years that I’m most
likely going to go totally blind sometime. It’s not certain – and I know very few ROP people who did -, but judging from the progressionof my condition, I know I will. In 1999, I decided, after the 1998 report that stated I had adjusted to a reasonable degree to my vision impairment but not to
blindness, that I wanted to be adjsuted to blindness as well. I still don’t know exactly what the folk who wrote the report meant – the arguments she used were that I didn’t think I needed a cane and that I called myself “partially sighted”, which difficulties are both over now -, but I knew that
I was going to lose my vision completely and I wanted to be prepared for it. I think that at the time I hoped or maybe even expected not to be troubled by further vision loss anymore. Not only did the loss of appreciation of vision still trouble me in 2004, even though I did not
experience the losses in basic skills and my self-concept I’d experienced in 1998, but the fact that my light sensitivity worsened made it impossible for me to ignore: in 1998, my light sensitivity had started, but at that time I could get by with regular sunglasses as the NoIR ones appeared to
be too large for me. I realize now that I can to an extent prepare for vision loss, by learning to do things wihtout vision – something I can, now -, but that I can’t expect not to be troubled by changes in my vision anymore. I also think that my wanting to be “prepared” for total blindness
has its drawbacks: I was “prepared”, in that I didn’t care – or maybe even in that I thought I didn’t care -, till early 2004, but ever since I’ve found myself still caring about residual sight – through the appreciation thing and the inability to avoid it cause of photophobia -, I’ve been
obsessed with remaining “prepared” to the point of missing its ultimate goal: adjustment. My attempts at coming across as if I don’t care about my residual sight may to outisders seem to signify adjustment – constantly highlighting and emphasizing minimal vision to the point of competing, as I did at the summer programme last year, does not,
but I don’t feel the need to do that one bit -, but they do not. I wrote about feeling at peace with a truly realistic image of my vision or the lack thereof on November 1, and that’s exactly what I mean here: I can fully accept my current situation – which, in my case, includes mostly using non-visual techniques and not emphasizing vision that’s not relevant -, but how on earth can I completely accept a situation that is not mine? I’m blind, I’ll never forget that, and I use alternative, non-visual techniques to accomplish the tasks of daily life, but I’m not totally blind and I can’t accept that I am. If that’s what the 1998 folk had meant or what my parents mean when they say they want me to learn to function non-visually, I respectfully disagree.

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